Welcome to Little Lauryn's very own page!
Many of you reading this blog were "with us" from the beginning, when we found out another Sycamore Sibling was on its way!
Those of you who are interested in reading about our journey with Little Lauryn from the beginning can click HERE!
Below you will find answers to FAQ's about Lauryn (and Jen's pregnancy with Lauryn).
I have been often asked if I felt a "gut feeling" - if "deep down" I thought Lauryn had Down syndrome. I really didn't. After the initial shock of learning there were some concerns, I really felt at peace about things, and really felt she was going to be just fine. It wasn't until several days prior to Lauryn's birth that I felt like God was guiding me in opening my mind to this true possibility. However, it wasn't until I saw her immediately after birth that I KNEW...and the reality that the concerns had come to truth set in.
Looking back, I think my doctors/nurses likely were more "certain" (even though there was no way to be certain without an amniocentesis) that Lauryn had one of the Trisomies. I think that "gut feeling" was felt by them, even more so during my hospital stay prior to Lauryn's birth. The care I received (and Lauryn received) was nothing short of amazing, and I think they were relieved and thrilled that Lauryn was born the healthy baby she was.
*You can read ALL about the ups and downs of my pregnancy with Lauryn, as well as Lauryn's birth and stay in the NICU HERE.
Lauryn did stay in the NICU close to a month after her birth. She needed a little assistance breathing (C-Pap for a day, oxygen for a few days). From there, Lauryn just needed to get stronger and learn to feed on her own. She amazed us with her progress...while her NICU doctor (who is incredible!) would have liked her to have gained a little more weight before going home, he was thrilled with how well she was doing. Often babies with Down syndrome will go home with monitors, a feeding tube, oxygen, medications, etc. Lauryn went home with none of that. Our little Super Girl!
Lauryn sees our family pediatrician for her well-child check-ups and sick appointments. She also has a developmental pediatrician at the Down Syndrome Clinic at Riley. We see her every few months. She has an ENT and a pediatric opthamologist. We now also have a pulmonary doctor at Riley who is working with us on Lauryn's sleep issues. Lauryn has an audiologist at Riley and an orthotist who treats her plagiocephaly.
Lauryn currently receives occupational therapy (OT) each week, physical therapy (PT) twice each month (although this will soon increase to weekly) and speech therapy each week. She receives these services through Indiana First Steps, an early intervention home-based therapy program for children under age 3. These therapists come to our home and allow (want!) me to participate in her sessions...the other kids can, as well. It's wonderful...we have learned so much and Lauryn is doing very well. Her therapists are FANTASTIC...her speech therapist just happens to be this great neighbor of ours...:)
Does Lauryn do the same things a typical baby does?
For the most part, yes! She is a BABY first...and has the same wants and needs of any baby her age. She cries when she is hurt, frustrated, hungry, or needs a diaper change. She smiles and laughs when she sees someone she knows/loves and wants to be in the middle of everything - especially where her siblings (biological and "sycamorical") are concerned.
Developmentally, Lauryn is delayed in some areas...and not in others. When looking at anything related to Lauryn's development - medical, physical, etc., we look at her adjusted age, which is 6 weeks less than her actual age. In this sense, she is much closer to many of her milestones.
Lauryn will do all the things any other baby/infant/child does, it will just take her a little longer...and she will have to work a little harder. One of the most significant attributes of a person with Down syndrome is low muscle tone. Lauryn does have low muscle tone, ut for having low muscle tone, her tone is still very good. As my oldest says, "Lauryn has 'high low muscle tone'"!
Muscle tone and strength (being strong) are different things. It gets pretty confusing! Lauryn's muscles are strong, but aren't toned to "naturally" work without some extra effort. She doesn't automatically or naturally do things with her muscles (at least in the same time frame) as typical babies may do. Let's take "reaching for an object", for example. We have had to show Lauryn how to move her arm to touch an object and how to work her fingers to grasp it. With guided help and practice, she is now able to do this on her own (we are still working on those thumbs, tho!). Lauryn would have eventually learned to do this/been able to do this without the early intervention of activities to help her, but it would have been significantly delayed.
I would say the biggest "difference" in our daily lives with Lauryn is our focus on these kinds of things. Where our other children naturally and progressively reached their milestones (without much thought or intervention on our parts), we really think about, focus on, and "practice" these things with Lauryn. When she does something new - big or small (which seems like it is every day) - everyone gets SO excited! We celebrate each and every accomplishment...not only do we focus more on this with Lauryn, but also with our other kids, as it's been a reminder of not taking things for granted and for being fully present with our kids.
Lauryn has a determination about her that is beyond her years (or months). She works so hard and rarely gives up. Yes, she has her "moments" where putting in the extra effort isn't worth it to her, but this is typically when she's just plain worn out/tired (or sick). Her OT has explained it as each hour of weekly therapy for Lauryn is like you or me running a marathon. While I am working on getting into better shape, at this point and time, I would be half-dead if I ran a marathon...in an hour no less! Lauryn gives a new meaning to "never give up."
Did you know Lauryn had Down syndrome when you were pregnant with her?
Not really. There were some concerns noticed on our 18 week ultrasound (with my high-risk OB) including small femur length, possible flattened nasal bridge, a cyst in the abdomen and calcifications in the abdomen. Each of these is a "weak marker" for a chromosomal abnormality. The cyst was gone in the next ultrasound, the calcifications had gotten smaller, her growth appeared normal and the nasal bridge appeared more normal. We had multiple ultrasounds, as well as a prenatal echocardiogram (which was perfect). While the words "chromosomal abnormality" came up more than once (to the point where we were beginning to think EVERY little thing could be an indicator of a chromosomal abnormality! - "she turned three times during the ultrasound...this could indicate a chromosomal abnormality" :) ), the chances that Lauryn was "fine" were far greater than not. We chose not to have an amniocentesis, as it didn't change a thing about our upcoming addition to our family. I have been often asked if I felt a "gut feeling" - if "deep down" I thought Lauryn had Down syndrome. I really didn't. After the initial shock of learning there were some concerns, I really felt at peace about things, and really felt she was going to be just fine. It wasn't until several days prior to Lauryn's birth that I felt like God was guiding me in opening my mind to this true possibility. However, it wasn't until I saw her immediately after birth that I KNEW...and the reality that the concerns had come to truth set in.
Looking back, I think my doctors/nurses likely were more "certain" (even though there was no way to be certain without an amniocentesis) that Lauryn had one of the Trisomies. I think that "gut feeling" was felt by them, even more so during my hospital stay prior to Lauryn's birth. The care I received (and Lauryn received) was nothing short of amazing, and I think they were relieved and thrilled that Lauryn was born the healthy baby she was.
*You can read ALL about the ups and downs of my pregnancy with Lauryn, as well as Lauryn's birth and stay in the NICU HERE.
Does Lauryn have any of the health issues so often associated with Down syndrome?
We are so very blessed! Lauryn has a healthy heart, healthy kidneys/bowel, and seemingly no serious health issues. Her thyroid is normal and her eyes look great! She has EXTREMELY tiny ear canals (which is not uncommon, but Lauryn's are super tiny!), which led to multiple ear infections and getting ear tubes at 8 months. She will soon be getting a sedated hearing test to be sure she is hearing normally (we know she can hear, but she has not passed her recent hearing tests). She also has obstructive sleep apnea, which we are watching closely.Lauryn did stay in the NICU close to a month after her birth. She needed a little assistance breathing (C-Pap for a day, oxygen for a few days). From there, Lauryn just needed to get stronger and learn to feed on her own. She amazed us with her progress...while her NICU doctor (who is incredible!) would have liked her to have gained a little more weight before going home, he was thrilled with how well she was doing. Often babies with Down syndrome will go home with monitors, a feeding tube, oxygen, medications, etc. Lauryn went home with none of that. Our little Super Girl!
Does Lauryn have to see special doctors or therapists?
Yes. The appointments can get overwhelming at times. However, she has simply wonderful doctors and therapists. We know that early intervention in all areas - medically and developmentally - is essential to Lauryn's progress and development. Lauryn sees our family pediatrician for her well-child check-ups and sick appointments. She also has a developmental pediatrician at the Down Syndrome Clinic at Riley. We see her every few months. She has an ENT and a pediatric opthamologist. We now also have a pulmonary doctor at Riley who is working with us on Lauryn's sleep issues. Lauryn has an audiologist at Riley and an orthotist who treats her plagiocephaly.
Lauryn currently receives occupational therapy (OT) each week, physical therapy (PT) twice each month (although this will soon increase to weekly) and speech therapy each week. She receives these services through Indiana First Steps, an early intervention home-based therapy program for children under age 3. These therapists come to our home and allow (want!) me to participate in her sessions...the other kids can, as well. It's wonderful...we have learned so much and Lauryn is doing very well. Her therapists are FANTASTIC...her speech therapist just happens to be this great neighbor of ours...:)
Does Lauryn do the same things a typical baby does?
For the most part, yes! She is a BABY first...and has the same wants and needs of any baby her age. She cries when she is hurt, frustrated, hungry, or needs a diaper change. She smiles and laughs when she sees someone she knows/loves and wants to be in the middle of everything - especially where her siblings (biological and "sycamorical") are concerned.
Developmentally, Lauryn is delayed in some areas...and not in others. When looking at anything related to Lauryn's development - medical, physical, etc., we look at her adjusted age, which is 6 weeks less than her actual age. In this sense, she is much closer to many of her milestones.
Lauryn will do all the things any other baby/infant/child does, it will just take her a little longer...and she will have to work a little harder. One of the most significant attributes of a person with Down syndrome is low muscle tone. Lauryn does have low muscle tone, ut for having low muscle tone, her tone is still very good. As my oldest says, "Lauryn has 'high low muscle tone'"!
Muscle tone and strength (being strong) are different things. It gets pretty confusing! Lauryn's muscles are strong, but aren't toned to "naturally" work without some extra effort. She doesn't automatically or naturally do things with her muscles (at least in the same time frame) as typical babies may do. Let's take "reaching for an object", for example. We have had to show Lauryn how to move her arm to touch an object and how to work her fingers to grasp it. With guided help and practice, she is now able to do this on her own (we are still working on those thumbs, tho!). Lauryn would have eventually learned to do this/been able to do this without the early intervention of activities to help her, but it would have been significantly delayed.
I would say the biggest "difference" in our daily lives with Lauryn is our focus on these kinds of things. Where our other children naturally and progressively reached their milestones (without much thought or intervention on our parts), we really think about, focus on, and "practice" these things with Lauryn. When she does something new - big or small (which seems like it is every day) - everyone gets SO excited! We celebrate each and every accomplishment...not only do we focus more on this with Lauryn, but also with our other kids, as it's been a reminder of not taking things for granted and for being fully present with our kids.
Lauryn has a determination about her that is beyond her years (or months). She works so hard and rarely gives up. Yes, she has her "moments" where putting in the extra effort isn't worth it to her, but this is typically when she's just plain worn out/tired (or sick). Her OT has explained it as each hour of weekly therapy for Lauryn is like you or me running a marathon. While I am working on getting into better shape, at this point and time, I would be half-dead if I ran a marathon...in an hour no less! Lauryn gives a new meaning to "never give up."
How do the other kids do with Lauryn? Do they understand Lauryn's special needs?
The kids are awesome with Lauryn. Lauryn's oldest brother has understood more from the beginning. He has a way with children anyway, and with Lauryn, it's more magnified. He ADORES her and she adores him. He is already spreading awareness and teaching others about Down syndrome, special needs, acceptance and inclusion as he talks to his friends, coaches, and teachers about his baby sister. The other kids have progressively started to understand more about Down syndrome and that Lauryn needs some extra help to learn how to do things, but they have really "gotten it" since the beginning. Lauryn is their baby sister, plain and simple. They have gotten used to therapists being here often and extra visits to the doctor. They have a gentleness with Lauryn that makes it apparent that they understand. They want to be around her...want to teach her...and just love her. While the tendency would normally be to do everything for her (which still happens!), they have come to learn that they have to allow Lauryn to do things on her own. Now, there's a limit to how long they can stand to let her work and/or fuss, but they "get it." Lauryn's sister is crazy about her. She is almost always by her side, showing her things, singing to her, playing with her, kissing and hugging her (sometimes smothering her), etc. There is just no way that Lauryn isn't going to "beat the odds" with the love she has from her siblings...and the high activity level at our house! Lauryn already has her own "posse" - made up of her siblings and many, many others! Seeing children young and old make connections in understanding acceptance and inclusion is a wonderful thing. 
